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    • #17894
      Jodi Enders
      Keymaster

      Were your worries and anxiety surrounding the pandemic more or less heightened this year than it was in 2020?

    • #17896
      Lionel Roosemont
      Participant

      My wife, our special needs daughter and myself (Generalised MG with bulbar problems) were all three people at risk. So we started staying almost completely inside, one week before the first lockdowns started. I had seen this coming since the beginning of January 2020. 1 month before the hoarding of toilet paper started , I had stocked rations to stay indoors for 3 months. We finally stayed inside for almost 1,5 year. In July this year we carefully came out again during 3-4 months.

      As most of you will probably know that with immunosuppression, the vaccines are not very efficient. My immunity one month after the 3rd shot (October) was at a level lower than most people have it after their first shot. So I am now again confided since 6 weeks, as hospitals are increasingly overwhelmed and it looks like this is going to continue for the next weeks.

      At the same time I am now quite hopeful that the new South-African version might bring relief. It’s not as dangerous as Chinese version, but the numbers are quite high. I’m confident (but could of course err), that the pandemic being at its worst might be over soon.

      One more thing. I’m quite convinced it’s not a question of ‘if’, but ‘when’ we will become infected. But I think that postponing that date as much as possible, will bring more medication and protection against it. It might well end up being a severe cold – which of course would be bad enough for us MG-ers.

    • #17897
      ChrisM
      Participant

      No, not really.  More frustrated with the inconsistency in regulations.  We have to learn to live with this as we cannot damage mainstream society out of fear.  No one “owes us” life and so we should cherish each day we have, come what may, and live each day to the fullest choosing joy over fear.  Yes, be prudent based on your comfort level, but life in isolation misses many opportunities and we shouldn’t lose sight of the balance.

      • #17911
        Lionel Roosemont
        Participant

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        Thank you Chris for your reply.🙂

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        You<span lang=”EN-US”>r stress of keeping a good balance in these days is so important! As, sadly, quite a few people in their distress and anxiety tend to lose that out of sight.</span>

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        <span lang=”EN-US”>Indeed :</span>

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        – Learn to live with the circumstances <span lang=”EN-US”>in mainstream society </span>is <span lang=”EN-US”>a healthy </span>ba<span lang=”EN-US”>sic attitude.</span>

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        <span lang=”EN-US”>- We have sooner or later all been frustrated by one or more regulations today, trying to balance the basic importance of freedom against the desire not to damage society.</span>

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        <span lang=”EN-US”>- Particularly your ‘putting joy over fear’ is also so important. Particularly in isolation.</span>

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        <span lang=”EN-US”>- The sacrifices needing to be made by isolating oneself over missing opportunities is certainly not an easy one: neither to go through, nor to have to decide about when they (‘isolating moments’ and ‘using opportunities’) are part of the right middle road.</span>

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        <span lang=”EN-US”> </span>

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        <span lang=”EN-US”>As someone once said:</span>

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        <span lang=”EN-US”>‘finding the</span> serenity to accept the things I cannot change<span lang=”EN-US”>,</span>

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        <span lang=”EN-US”>Having the </span>courage to change the things I c<span lang=”EN-US”>an.</span>

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        <span lang=”EN-US”>And getting the wisdom to know </span>the difference<span lang=”EN-US”> between the two.</span>

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        <span lang=”EN-US”> </span>

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        <span lang=”EN-US”>Great principles, indeed, Chris. Thank you again. </span><span lang=”EN-US”>👌</span>

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        • #17912
          Lionel Roosemont
          Participant

          sorry, I tried to copy/paste the text from word, but cannot edit the text anymore to delete the unnecessary coding that appeared after the paste.

        • #17922
          ChrisM
          Participant

          No worries!  I could figure out what you said.  Press on!

    • #17908
      Alan Bridle
      Participant

      As this was the year in which symptoms that I had experienced for several years worsened and were finally diagnosed as MG, as well as the year in which it became clear that vaccine hesitancy by a large number of my fellow humans would help the coronavirus mutate into more transmissible variants, my anxiety level has definitely increased.

      I do hope to keep it within sensible bounds however.  My main uncertainty now is over the best strategy for dealing with exposure to more transmissible variants for those of us who have MG and are immunosuppresed by the design of our treatments.  I have no wish to experience COVID symptoms on top of my MG but I realize that pumping up my immune system with the vaccine can also be problematic.  I wear a good quality mask whenever I am indoors outside my house or near anyone who I do not know well.  And I leave the house only for essential trips and exercise.  I am retired so I am lucky to have choices.

      But anyone who is immune suppressed must feel more anxious than the general population in the presence of the fast spreading variants, so I expect some of my anxiety to remain until the pandemic really is over, globally.

      • #17913
        Lionel Roosemont
        Participant

        I can only agree with you Alan. I’m doing the same as you do. I wish you much strength.

      • #17923
        ChrisM
        Participant

        Alan, And I “ditto” Lionel’s wish to you of strength.  Thanks for sharing!

    • #17948
      Amy Cessina
      Participant

      I don’t think spreading a potentially deadly virus is a freedom or a choice. We should protect other people. I’ve said this before my son is a nurse on a covid floor of a large philadelphia hospital. The people dying are organ transplant, immunosuppressed  and cancer patients. It is not fair to compromise their lives so you don’t have to wear a mask or get a vaccine. Plus my son said all the unvaccinated immediately go to the hospital demanding treatment even if they are mild. So I guess they aren’t adverse to pumping themselves full of medications that were approved by the same FDA  that approved the vaccines.

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